AB1797-HPR HIGH AWARENESS AMONG NURSES OF THE SYMPTOM BURDEN PATIENTS WITH SSC-PAH IS IMPORTANT TO PROVIDE THE BEST POSSIBLE PATIENT CARE
Authors: M. L. Ramsli, Ø. Midtvedt, T. Garen, H. J. Bjørkekjær, D. Karterud, A. M. Hoffmann-Vold
Journal: Annals of the Rheumatic Diseases (2023)

<h3>Background</h3> Systemic sclerosis (SSc) is a severe disease with significant increased morbidity and mortality. A feared organ manifestation is pulmonary arterial hypertension (PAH). Little is known how the development of PAH affects SSc patients in their symptom burden. It is therefore important to explore the health-related quality of life (HRQoL) in patients with SSc-PAH. A major purpose of care is to reduce symptoms and disability, and be able to improve the HRQoL. <h3>Objectives</h3> <b>1</b>) To explore SSc patients perceived HRQoL. <b>2</b>) The nurses role to influence the patients to improve their HRQoL for the best possible care in the clinical practice. <h3>Methods</h3> Six SSc patients diagnosed with PAH from the Oslo University Hospital were assessed by in-depth interviews conducted in the period June to August 2022. The interview guide contained 21 questions. The results were coded into ten subthemes and five main themes. The study had a qualitative phenomenological-hermeneutical design, based on individual semi-structured interviews. This means we focused on the patients` subjective opinions to gain insight of each patient about their individual experiences of HRQoL based on their meeting with nurses within the special health care. We assessed symptom burden using VAS-scale based on patients` pain, general health and fatigue, and wanted to see if there was an association between the symptoms and what was told in the interviews. The patients experience in the meeting with nurses was one of the questions in the interview, where the patients themselves elaborated on their answers. <h3>Results</h3> Of the included six SSc patients with PAH, 4 (67%) were female and 2 (33%) men with mean disease duration of 5 years since PAH diagnosis (Table 1). NYHA functional class varied from 1 (mild) to 4 (severe) with a median of 3. Patients reported fatigue (VAS) was the most prominent symptom (Figure 1), confirmed by the results from the interviews. This also lead to physical and psychological challenges in everyday life, and reduced HRQoL. The patients` were mostly satisfied with the nurses, but felt some nurses had not the time when the patients needed it the most. The patients also highlighted that they felt that some of the nurses did not have enough knowledge about the diagnosis. This led to patients` repetition and explanation why their oxygen level was reduced, why they had heavy breathing or why it was not possible to measure pulse or oxygen level on the fingers, due to reduces peripheral circulation. The patients` wish was also to be seen and understood by their caregivers and friends. <h3>Conclusion</h3> Our study revealed that fatigue was the main symptom causing reduced HRQoL. Moreover, we show the importance of educated expert nurses in the management of PAH in SSc and the inclusion of information to caregivers, patients and next of kin. Nurse's awareness about the symptom burden and unmet needs of patients with SSc-PAH is important to give the best possible patient care. <h3>REFERENCES:</h3> NIL. <h3>Acknowledgements:</h3> NIL. <h3>Disclosure of Interests</h3> Mona-Lovise Ramsli: None declared, Øyvind Midtvedt: None declared, Torhild Garen: None declared, Hilde Jenssen Bjørkekjær Grant/research support from: Janssen, Dag Karterud: None declared, Anna-Maria Hoffmann-Vold Speakers bureau: Boehringer Ingelheim, Jannsen, Medscape, Merck Sharp &amp; Dhome and Roche, Consultant of: ARXX, Boehringer Ingelheim, Genentech, Jannsen, Medscape, Merck Sharp &amp; Dhome and Roche, Grant/research support from: Boehringer Ingelheim, Jannsen.